What It Means to Be a Caregiver

Medically reviewed by Debra Sullivan, PhD, MSN, CNE, COI on November 18, 2016Written by Kay Bransford

Kay Bransford bio

A new normal

Most people don’t plan on needing someone later in life to handle their medical and financial needs. But the reality is that 70 percent of people ages 65 and older need some form of long-term care.

In 2012, four years after my siblings and I started to worry about our parents’ ability to maintain their health and safety, they allowed me to step in and advocate for them. Moving into an assisted living home was a turning point for them, and it allowed them to recognize that their needs had changed.

My parents and I never outright discussed this shift in roles. I just stepped in and helped, always being mindful that they were my parents and I was their child. Instead of pushing me out of their business, they welcomed me into conversations about how they would be spending their time and money. I was honored that my parents entrusted me with helping them manage their lives.

I also felt melancholy about this change. The reality was that my parents were truly unable to manage their own tasks and counted on me to make choices for them. Although I had known this for some time, having my parents acknowledge this was a pivotal moment.

Getting your legal ducks in a row

Long before they received their dementia diagnoses, my sister, who is a lawyer, advised our parents to update their individual wills. At the time, they were both in their 70s.

Because of their age, she also encouraged them to assign financial and medical powers of attorney. This would ensure that if they were ever incapacitated, someone could act on their behalf.

So in 2002, my parents did what conventional wisdom advised: They created an estate plan that included:

  • a durable power of attorney (POA)
  • a healthcare POA
  • a trust
  • wills

When my parents updated their estate plans, they named my sister their primary agent. In addition to being a lawyer, she’s also the oldest of us four kids, so this seemed like a good choice at the time.

They hadn’t considered the fact that she lived across the country. If something were to happen, she wouldn’t be able to attend medical appointments or collect the bills when they came in.

Legal terms

  1. Durable power of attorney (POA): Someone who has the legal authority to act on your behalf financially.
  2. Medical POA: Someone who has the legal authority to make decisions about your healthcare.
  3. Primary agent (also called attorney-in-fact): A person who is designated to act on behalf of another person. They can make any decision or sign any document on another’s behalf.
  4. Decisional capacity: A person’s ability to make their own decisions. This assessed by your doctor.

Fast forward to 2013. My parents were at their annual physical when their doctor recommended that we update their durable and medical powers. The current POAs listed my sister as the primary agent, and I was the secondary agent. The doctor suggested that since I was the local child, I should be the primary agent. The doctor also said that we should be prepared for up to 10 years of care for one or both of my parents.

Before our parents signed the updated powers of attorney that would list me as their primary agent, we had their doctor validate in writing that they both had decisional capacity.

We were told that had we not had their decisional capacity documented, their estate lawyer might refuse to update the power of attorney documents. We were also told that because of our parents’ dementia diagnoses, the new power of attorney documents could be challenged under the premise of eldercare fraud.

We wanted to ensure that we did everything by the book so that we could get the tools in place to help our parents.

Siblings can be a blessing or a curse

siblingssiblings quote

One of the most difficult issues for families occurs when adult children disagree about what’s best for mom or dad. Because my parents were so resistant to accepting any help from their adult children, it forced me and my siblings to work together to get our parents the help they needed.

We faced a variety of issues, like how to manage our parents’ financial portfolio. Was dad risk averse or aggressive in managing their investments? Was a medication to make mom less anxious worth an increased risk of another stroke? Should we move mom out of her current assisted living community to a new community designed for people with memory care needs?

We certainly didn’t all agree. We arranged monthly conference calls to make these decisions, and when major issues loomed we would have calls weekly.

When we started to have disagreements, we put rules of engagement in place to help settle disputes:

  1. Spouses are invited to participate, but only direct descendants can vote.
  2. It’s okay to disagree, but it’s not okay to be disagreeable.
  3. Majority rules on any vote, unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

There are four of us, so we could’ve ended up with a tie when it came to voting, but we never did. Even though I was the primary agent, I counted on my siblings to help me make decisions for our parents and how we would use their assets. We never wanted to rush something; instead, we took the time to listen to each other and research our options. We wanted to be sure that we truly understood what we were making choices about. Because of this, our deciding votes were often unanimous.

Our guiding principle was the fact that we were losing our parents, and in an effort to honor them, we agreed to do our best not to lose each other in the process.

Managing a life in tandem

For me, the biggest challenge was figuring out how to help my parents without stripping them of a sense of purpose.

Because of this, simple errands took on new meaning. For example, it was easy to pick up new underwear for my mom while I was doing my own shopping. But when I gave them to her, she would inevitably find something wrong with the purchase.

managing life in tandem quotemanaging life in tandem

It didn’t matter that she already owned the exact same kind — she wanted to go to the store and pick out her own. I came to realize that it was more about her feeling in control than my failure to buy the right type of cotton panties.

Although it would be easier to just do things for my mom and dad, I had to recognize my parents weren’t young children that needed parenting. They just needed extra help navigating their lives.

For example, even though my mom no longer managed the finances, she wanted to keep her checkbook in her wallet. This helped her feel as though she still carried some of the financial responsibility.

As her dementia progressed, she started misplacing her wallet. We wanted her to be able to hold on to her checkbook, so we opened a new checking account containing a small amount of money. We swapped out her checkbook so the account that received dad’s pension and their social security payments weren’t at risk.

Taking on new responsibilities

After my parents moved into their assisted living community, and the new powers of attorney were put into place, I was responsible for my parents’ finances.

This included their bill payments, medical care and invoices, and property expenses.
One of my brothers helped monitor and manage their primary retirement account, but I took care of all of the rest.

I also acted as their healthcare advocate and attended all of their medical visits. Before long, every appointment started to feel like a quick-fire round at a game show.

When we arrived at the doctor’s office, I would find my parents a seat and offer to check in and fill out all the forms. The reality was that my parents were unable to answer many of the questions on the paperwork. Instead of just doing it for them, I asked if they would like me to do all of the writing. They always said yes.

The visits typically began with a verbal rundown of everything I had documented on the intake form. Though this sounds like a simple part of the routine, it would cause critical information to fall through the cracks.

For example, when they asked my dad which medications he was taking, he would say “none,” even though this wasn’t the case. Other times he forgot that he had a pin in his right hip. After my mom failed to report her recent stroke, I started to interject with the correct answers.

Having me speak for them made both of my parents uncomfortable, so I had to change how we approached each appointment. I started to bring a pre-written note to hand in with the intake forms. The note said: “My parent has been diagnosed with dementia and is unable to provide a verbal report on their medications or medical history, please refer to the intake forms.”

This change helped make every appointment a little easier and ensured that the doctor had the most up-to-date information about my parents’ conditions.

Cherishing the time you have

Depending on the week, I would spend hours on end following up with doctors, paying bills, and coordinating meals and activities. By the time I finished what was required of me as a caregiver, I would be exhausted and ready to hit the hay.

But I didn’t want to miss out on the lighthearted aspects of my relationship with my parents — the smiles, the laughter, the joy. I worked hard to preserve special occasions and continue with family traditions.

mom and dadmom and dad

When my mom turned 82, my daughter and I packed up 82 small gift boxes of varying sizes. We filled each one with candy. Each box contained a piece of my mother’s favorite Russell Stover chocolate or a few peanut M&Ms.

We put the boxes in a large basket, arranged some balloons, and took my parents out to lunch to celebrate. Even after the chocolate was gone, my mom wouldn’t let me toss the colorful gift boxes we had packaged up for her birthday.

Although my mom and dad both experienced memory loss, I didn’t want them to miss out on birthdays or anniversaries. I wanted them to be able to carry on and enjoy these celebrations in the moment.

Coping with your changing role

Because I was the one taking care of my parents, I was also charged with keeping everyone up to speed about what was going on and how they were doing. So I started a blog.

It was exhausting to tell the same stories over and over. Sometimes, things were so bad that just saying it out loud turned on the waterworks … and I’m not a crier. I found that writing down these stories helped me process and reflect on the issues I was facing.

The unexpected bonus was that others could comment on my posts and offer suggestions. My blog became a huge outlet for me to not just share what was happening, but to process and improve on my caregiving abilities.

raising kids quoteraising kids

Acting as my parents’ caregiver was a huge responsibility, and it easily took up 20 hours or more each week. Between raising two children and supporting my parents’ needs, my full-time job became overwhelming. My husband understood when I needed to transition out of my executive job at a Fortune 200 firm. Although this caused financial hardship for my family, we knew it was the right thing to do.

My caregiving journey sent my life down a new path, and I ended up launching a business to help other caregivers. I needed to find meaning and purpose beyond just being a caregiver. I also wanted to be able to contribute financially to my household.

Don’t let hindsight plague your thoughts

When you reflect back on an appointment, decision, or event, it’s important to remember that you made the best decision you could using the information you had.

I cared for both of my parents through the end of their lives, and I had to make some difficult end-of-life choices for them.

One that continues to plague me is the choice to move mom from her original assisted living community to a community dedicated solely to caring for people who have memory issues. I wonder if I should have moved her into my own home.

For years, my mom said that she never wanted to live with her children. We had one family friend who joked about putting a hospital bed in her kid’s living room when she got older, but my mom was adamant that she would never want her children to have to care for her.

mommom

When the assisted living community that she lived in was no longer the best fit for her, my siblings and I searched for a new community. At the time, we expected mom to live for several more years.

Looking back, I wonder what I would’ve done had I known that mom would only have one more year to live. Would I reconsider her desire to live in a community and move her in with me? For many reasons, I know the community was the best choice for everyone involved, but I can’t help but wonder about the weight and consequences of the choices I made.

It’s easy to wonder “What if?” but I have to remind myself that it doesn’t serve a purpose. I know that I made the best decisions possible using the information that I had at the time. And it doesn’t matter how much I second guess those choices — it still won’t bring my parents back to me. What matters now is that I’m at peace with the decisions I made.

Catch up on part one: The fight to become my parents’ caregiver »

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